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Pollypockets

Post Sepsis Syndrome

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Hi All, has anyone else who survived Sepsis had relapses, where you get an infection then end up in A & E on a drip of Antibiotics & fluids, or is it just me? My story :-

 

I am a survivor of sepsis which was caused through not being able to get a dentist while on a wk-end away on the IOW last October, when I did see one 2 days later, he gave me such strong antibiotics that it turned into sepsis, my body could not cope with the infection, luckily for me I have a sister who is a nurse, (we stopped of at her house on the way back home) she took one look at me and took me to Bournemouth A&E, I was immediately put on a drip of antibiotics & fluids, I was transferred to Poole hospital to carry on my treatment and have the offending tooth out, I was in Hospital for 5 days, a year later I am still suffering, I had an UTI in April, I was in hospital within 8 hours of feeling ill, Just a few days ago I had a throat infection, I was in hospital again within 8 hours! I found this experience was hard, all they wanted to look at was my throat, they were not listening when I said I was post sepsis, they had never heard of it, yet it is in my medical notes!! Each time I get an infection my heart goes into tachycardia, 184 beats a Minuit, (I get all they symptoms of SIRS), I can not slow it down with breathing techniques, now that is scary!!  

I went to my Doctor's yesterday to go through my results from my recent admission to A & E, she said I had a throat infection, to say I was stunned was an understatement, I had all the symptoms of SIRS, (Systemic inflammatory response syndrome)!  I have written to PALS to get my blood test results as I know I would have had sepsis markers!

 

I feel that no-one in the medical profession understands post sepsis syndrome and I am fighting against the flow of a river of ignorance!!

 

Am I the only one who feels this way?

 

Sorry to go on, I would love to hear from anyone else who is or has had the same experience!!

 

Love this site,

 

Glad to be still here and god bless those who lost there fight!!  

 

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Hi and welcome.

I do hear your frustration and have had similar experiences. I got sepsis in 2009 and the only consultants I saw post hospital were neurosurgeons who wanted to discuss my back operation and not the infection post op and sepsis.

Yet I do think in recent years this attitude is changing and let's not forget UK Sepsis are relatively new (2012?).

My advise, share with medics the literature on the website such as PSS and how survivors are affected. Drop some literature off at you local GPs and if confident call them and ask if they had read it. It's our job the survivors to educate and lead. Frustrating yes, but it can be very rewarding when 1 of them listens and understands.

 

Keep up the good fight,

 

Mark

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I have found the same problem. 21 months on and still struggling with pains and weakness. I am with the infections disease specialist in Hull at moment who told me last month none has after effects after Sepsis and my pain would be related to something else. I was in shock. I have since taken a booklet in from the Sepsis trust and hope they read it. I agree with Mark it is our duty to raise awareness. If is wasn't for this site I would feel very much alone and think I was going mad. 

 

Debbie

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Hello pollypockets, good to see you here and posting,like the others i can also hear your frustration,its something many on here have been and still go through,recurring infections post sepsis can be a massive worry,iv had five post but none requiring hospital treatment but iv had iv antibiotics at times for another issue.for many recovery from sepsis can be a long and painful process with setbacks,people with a compromised immune systems the very young .the elderly are in the high risk cat for recurrence.this makes it all the more important that we become sepsis aware,and like you have already done...speak up when necessary.

I know your sister is a nurse but if your ever concerned or worried you could always call the trust and speak to one of the nurses 0800 389 6255 they really are good and helped me again recently

wishing you recovery.

kind regards

Red.

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Hi and welcome.

I do hear your frustration and have had similar experiences. I got sepsis in 2009 and the only consultants I saw post hospital were neurosurgeons who wanted to discuss my back operation and not the infection post op and sepsis.

Yet I do think in recent years this attitude is changing and let's not forget UK Sepsis are relatively new (2012?).

My advise, share with medics the literature on the website such as PSS and how survivors are affected. Drop some literature off at you local GPs and if confident call them and ask if they had read it. It's our job the survivors to educate and lead. Frustrating yes, but it can be very rewarding when 1 of them listens and understands.

Keep up the good fight,

Mark

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Hi Mark, Debbie & Red Squirrel

 

Thank you for your input, (much appreciated) glad to know I am not alone!!

 

I have since had some literature sent to me from Sepsis UK, I have taken leaflets to my Doctors & Dentist, I have also posted them on the boards of a few supermarkets!! 

 

I like you all am trying to spread the word of PSS, as it is not taken seriously!

 

I am still waiting for my blood results from A&E so I can have my medical records changed! I will keep site up-dated as to what happens next!!

 

I will keep up the good fight along with you all!!

 

Pollypockets

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             Dear Polly ,

 As you will have guessed from my ' immune system ' thread , I fall into the same category as yourself .

 I contracted sepsis in December 2012 and was very lucky to survive [ I suffered multiple organ failure including my heart ] - I was in hospital for a total of 3 months as I contracted pneumonia 4 days after returning home . 

 In October 2016 I began feeling just slightly unwell , I felt as if I had mild flu , but I also had low blood pressure and a high temperature - now if I could think I had the beginnings of sepsis then why couldn't the two Doctors I attended ? 

I went back 5 times until the day arrived when I had severe pains and turned yellow from jaundice - I was sent to hospital immediately and treated for ' inter abdominal sepsis ' but was also told I had panreas/gallbladder and liver problems which I later discovered was caused by a blockage in my ' ampula ' [ probably a stone from my gallbladder ] .

 

 Now of course it could have transpired that I didn't have sepsis when I first went to our GP , I may not have had it the second time but there were symptoms of sepsis which I did point out to them -

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Polly, I know exactly how you feel and am suffering with infections since Sepsis which have never gone away. There does not seem to be anybody in hospitals who deal with getting rid of infections after Sepsis, as I was put under Urologists who did not seem interested in infections and know I have been released from hospital before the infections were clear as they needed the beds. If each hospital had someone who had an interest in Sepsis and saw everyone who had Sepsis I am certain they could offer advice to people like ourselves on this forum.

 

David

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Hi David, 

 

I agree with you, with such press about Sepsis and how to spot the symptoms, there is not enough back up for people who survive!

 

And the medical profession these days only seem to treat one symptom, they don't look at the cause!

 

I am not knocking Doctors, they do a great job, but I think Sepsis is in a league of it's own!

 

I now keep spare antibiotics in my handbag and first aid kit, I'm also, trying to cure myself holistically, I must be doing something right because everyone around me has been ill over Christmas and I was ok?? Albeit, I don't want to speak too soon!! Lol

 

I wish you well, and keep up the good work

 

Pollypockets

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I am thinking of campaigning this year to raise awareness of Post Sepsis Syndrome. I am thinking you tube vids and also witing letters to medical professionals, mps to help get benefits for those suffering and can't work, and physo's who seen clueless with how to help.

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Last year I became involved with the local hospital Patient Bank Programme where we role play or display our own conditions to student doctors, nurses and pharmacists, for their training courses. When speaking with them I like to raise my experiences of Sepsis in the hope they are made more aware of the condition and what to look for.  I believe many teaching hospitals are starting programmes like this nowadays and it is nice to help the youngsters in their career.

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The Dundee University and Ninewells Hospital were advertising and asking patients attending the hospital if they would like to help. I went along to an introductory meeting to learn about what it was about. Apparently this has been going on for about 10 years here and other teaching hospitals are now taking it up. They are looking for patients who have certain conditions, maybe a heart flutter or arthritis to answer questions and show that condition or people who will act out a condition such as a Heart Attack, Incontinence, Sepsis, leg and ankle pains etc or maybe act out a grieving or aggressive parent or relative. They also have replica wards which are identical to any hospital ward and trainee nurses have to take temperatures, blood pressure, help patients to the loo and answer questions as if you are a first time visitor as a patient to the hospital. They will also have scenes where the Trainee Doctor is left in charge of the ward and events happen to see how he/she reacts. I find it very interesting and a way of helping trainee Drs, Nurses & Pharmacists get practical training on real people.  If you are interested contact your nearest teaching hospital to see if they have a scheme. 

 

David

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Hello, I am new to this forum , I am also a survivor of severe sepsis. I will briefly explain what happened then ask you my question.

I am post sepsis 9 years this July I had a planned hysterectomy all was fine as we thought was discharged went to recover, a week later my husband rushed me into our local hospital. That's when my nightmare began after being in POCCU ( post operative critical care unit ) for 7 days then transferred to ICU I was there for 7 weeks it transpires I had a stitch in my colon from my hysterectomy which leaked went into my blood stream and I ended up with severe sepsis, septic shock all my major organs where starting to shut down they drained a litre of abcesses out of me. I was on a ventilator I had a colostomy bag, I had treachotomy as well as lots of other problems I had pneumonia which fluid had to be drained out of me. I was just not getting better . I had 7 pints of blood over the weeks it was never ending. When i was starting to feel better I had to learn to walk again build my muscles up again it was an awful time.

So after 3 months of being in hospital I was able to come home and that was quite hard to try and start living " a normal life " again. So okay 9 years on I am confused a little as I have had tender/ sore hips for as long as I can remember since my sepsis and I don't no if this is to do with my sepsis or if just maybe me needing to be a bit more active , however around 2 years ago I went to my GP and told her about my hips being sore she sent me for an x-ray but didn't show anything up. I also have on the bottom inside of my leg a swelling it doesn't hurt , it's just there it never goes down in fact very very slowly I think it's getting bigger . Is this anything to do with my sepsis? I have elevated my leg does not improve at all. So my question is can anybody give me any advise/thoughts on this? Many thanks.

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  Hi Jules ,

Your experiences of sepsis are very similar to my own , I suffered multiple organ failure , my heart stopped for long enough for the ICU Nurse to phone my wife to tell her I'd passed away then while they were talking I returned to life - after a total of 3 months in hospital [ I also contracted pneumonia and needed dialysis ] I had to leatrn to walk again . I also have painful hips but that's because I have had a spinal problem since 2011 - I'm not great at walking any more and I do tend to sit down a lot - I would urge you to seek Doctor's advice about your swollen leg - it won't be anything connected to your sepsis but it will need looking at , quickly . Good luck and report back .

Peter .

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Hello all,

I had sepsis in 2015 I was 27 and almost lost my life as professionals just assumed it was the kidney stones making me feel that way.

I'm still having such nasty relapses but like you it's never taken seriously it always gets blamed on anxiety attacks (which it could be) but I get the following symptoms:

Fast heart rate, greyish skin tone, shivers, chills, hot flashes, vomiting. In the end I lay down and just breathe and usually fall asleep. It's not always that easy as I have 2 young babies.

I believe what we need is a GP who understands and fast tracks us to hospital straight away. I would feel so much safer. I get panicky thinking how long the process is from feeling awful to actually getting to the hospital. I was dying last time and was still kept waiting. I'm still scared 2 years on it's just awful. I don't know what to do to have a better quality of life and I try sooo hard. It will just suddenly got no reason overcome me with flashbacks and fear. If I do get a UTI I also am terrified it will lead to me being really poorly again. I've had councilling I've pushed myself to go on holidays, days out, I'm currently on maternity leave so am a full time mum. I just want the fear and physical symptoms to go away. But how?

Sorry to write an essay it's just so nice to let go and be honest. X

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To about_Anne, I have read your post and hear & understand all that your going through , I/we have all had these times where we haven't felt so well and feel something is not quite right what I would say is you know your body you know if something doesn't feel right always go with your gut instinct and if you need to see a Dr keep getting appointments to see her/him. I would call your hospital and see if you can have a chat with the sepsis specialist who looked after you and ask him to check you over. Also it maybe some of these concerns are psychological perhaps you could see about counselling ( I had 3 lots of sessions at different times) and I like you have scary moments where I worry about being back in ICU or there might be a moment in time and I think something going to happen to me , I had my sepsis 9 years ago and it never goes all these thoughts but it does get better. Also with you having 2 young children is there anyone or a volunteer group that can have your children a couple of hours a day. I wish you well.

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Hi Anne, sorry to hear that you are having trouble trying to get better, It will take some time, firstly you will be fearful, when you have a near death experience it is always on your mine, two you have young kiddies and this will make you worry more!  I have had the same symptoms that you are going through, palpitations, sweats etc, it's all part of the process, Fearfulness is a terrible thing to be going through, may I suggest that you go to see your Doctor, tell him/her how you feel, they will suggest some counselling, I took this option and I have to say I felt and feel so much better, they show you how to think differently!  I still keep antibiotics in my cupboard (just in case), I drink Camomile tea to relax me before I go to bed (helps with palpitations) and I stated taking Cilantro tabs, it helps to combat infections!! So far this has all helped me!!  I hope I have given you some helpful information, and I hope you find a solution that will work for you, don't give up, you will overcome this!! sending love & peace Polly x  

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